Must not forget the back

This odd and awful sacroiliac joint dysfunction and lumbar/sacral degeneration… is it from pregnancies, too many years compensating how I move? Is it from age or could it be related to my Rheumatoid? No one really knows. And solving its mysteries isn’t as important as treating it and living through it. At least, that is my doc’s plan.

Today was another Radiofrequency Nerve Ablation, right side lumbar 3/4. Marc drove me. I got admitted, saw anesthesia, Dr Michaud and was ready to go back to the OR.

#WaitingRoomShoePic

I was developing a nasty migraine on the drive in… weather. It was weathering outside… the clouds were the wrong colors and the air was thick. By the time they took me back to OR, my migraine was at a 6.

I took my nap with Propofol and Fentanyl for 15 min. I used to do my back procedures without sedation. I was that strong.💪🏆 But I would get very nervous instead. Once another doc inserted the needle differently and I felt like I was being disemboweled on the table. Good times. My lord, that was a painful event! Also, I have a habit of vasovagal-ing right after the procedure: despite lying on a litter, my pressure drops ridiculously low, I’m covered in sweat and passing out. Idk why. I suspect the injections themselves have something to do with it. Anesthesia for the 15 min procedure and the required driver seem to fix all these problems.

I woke up fine. Got my favorite fruit punch juice boxes – 3! And some cheezits – 2! And Marc got me home before noon. The staff are the nicest I’ve ever met.

My sweet Boy Toy…

The Fentanyl was helping. But soon after getting home, my back started to burn and my migraine was ramping again.

I could tell my day was over. Medication, ice blanket for my back, ice wraps for my head, and bedrest.

I still managed to clean up after the Guinea pigs we’re pet sitting, change laundry, repeatedly scold teens for not doing their chores, and make dinner.

The storms rolled in a few hours later: violent storms… with lightning and loud thunder. We lost power for a second and our internet seems broken.

I’m back in bed. More medicine. And my head and back are crying mad.

I don’t love RFNA. I know from experience that the next few days will be really rough with terrible back pain. Then I may see some improvement.

In 2 weeks I’ll need to go back in for the other side. Sigh. 🙄

The absent friend

What’s worse than #ChronicMigraine ?
…when, despite treatments & medicines & rest & planning, I simply can NOT power through and do something I really, really, really want to. I simply can NOT get out of bed, not even crawl to an event I committed to & was looking forward to.
I am just so sorry… and just so sad. All I do is let people down. Why would anyone want to be friends with someone so unreliable, sick and …absent? It is terribly embarrassing and isolating. It’s just a shadow of a life.
I am just so sad. So sad …and so sorry.
#speakyourmigraine
djk #MyBeautifulMigraine

It’s the Fourth of July. We’ve been invited to a culdesac celebration. I can’t leave the bedroom. I’ve tried everything and I will never go to the ER. I’ve sent my family off to the party with my deepest apologies. It’s time for an injection of sumatriptan and phenergan and a mini coma. Time to close and lock the bars of my head prison and perchance sleep away this intolerable episode.

How many times can you cancel before people stop asking to be friends?

Stuck on repeat

Stuck on repeat, repeat, repeat…
My ice packs can’t keep up.
*O starz & O gartres!*

This has been a nasty nasty run… weather, allergies, whatever it is, it’s awful. Is my botox running out? Am I still trying to adjust to getting off the CGRPs? My head is a million degrees all the time, and the fatigue, malaise, and feeling like migraine crap.

#ChronicMigraine
djk #MyBeautifulMigraine

Exercise Tips for People With Migraines | Everyday Health

This article is interesting… hilarious and insulting as well.

I have always exercised. Through 4 pregnancies, when I was a young adult, and I still do now. I’ve never felt one endorphin (not one), but I cannot argue with the fact that exercise builds muscle, tones every part of the body, and muscle helps burn unwanted fat. Exercise is good for you.

There were times in my depression hells where I pushed at exercising very hard… trying like mad to curb a chemical brain problem with “endorphins” that never showed up. Zoloft, not exercising, saved my life. Hats off to people that experience endorphins, I only experienced sweat and fatigue. Lol. And eventual muscle mass.

I was settled into a decent exercise routine in ~2007. I’d workout on the “dreadmill” to about 3 songs, varying tempo, my step pattern, difficulty. Then I’d do several sets of free weights for upper body. I always worked out in the morning, before the kids got up, before going to work. I’m not a morning person, but getting exercise out of the way has been the only way I can stay consistent. I’ve tried gym memberships, different classes, etc. Morning… 30 minutes… 5 days a week… that’s how I roll.

By 2011 I began to notice severe changes. I just could NOT get up and exercise. In fact, I could barely GET UP. I was walking around like a zombie until noon at my job. I had had a terrible case of Shingles and was recovering, but noticed a scary side effect to Gabepentin in my recovery. My legs were twice size of normal with edema and I was having trouble breathing on the treadmill. Yikes. I went off the Gabepentin and used a diuretic and recovered. Gabepentin is now listed as one of my drug allergies.

But the exercising… 4 out of 5 days it was absolutely impossible. I had NO energy at all… I could barely function to get in a shower, much less a workout. It was bizarre. It was confounding. What was happening?

When I did exercise, it was often with a migraine or it triggered a migraine. My world was spinning out of control.

Fast forward to 2019… I’m able to exercise 4 out of 7 mornings a week. But cardio is no longer an option. It literally feels like it is killing me and I have to focus on physically being able to do laundry and make dinner, instead of stepping or walking the dog or moving on the treadmill. Now, I do yoga (I’ve been doing yoga for 20 years, I’m just no longer able to attend classes). I work a yoga pilates routine for about 20 minutes. Then I do about 15 min free weights for my upper body.

This change in exercise shows. My weight is 20 lbs higher than it was in 2008. Sometimes after my yoga routine, all I can do is crawl back into bed as I’m utterly incapable of moving. Sometimes I can’t possibly do the exercise routine. Not an option; cannot move.

That’s why reading these articles hurts. I don’t think these articles are written for Chronics. If they are, the authors have no concept of physical limitations of Chronic Migraine. I think instead, they are written for episodics/Normals. If I could still be jumping and dancing to zumba, I would! No hesitations! But I cannot. I absolutely am no longer able. And that fills me with guilt and sadness. And I’m sorry I ever saw this article. 😰

A good rule of thumb: Don’t exercise if you’re in the middle of a migraine, as it can make the pain worse, Dr. Kriegler says. When you’re pain-free, on the other hand, exercising can help ward off migraines by relieving stress, a common migraine trigger. Exercise also stimulates the release of feel-good hormones called endorphins and enkephalins, “our body’s natural painkillers and natural antidepressants,” respectively, says Daniel V. Gaz, a physical activity and assessment program manager at the Mayo Clinic in Rochester, Minnesota.

https://www.everydayhealth.com/hs/exercise-tips-for-people-with-migraines/

​My Job, the Chronic Migraineur

mybeautifulmigraine

by D KOBAYASHI
My job doesn’t pay…in fact, my husband and I spend thousands upon thousands of dollars on “my job” every year – lost work as an RN, procedures, therapies and treatments not covered by insurance, new supplements well-meaning people swear by, expensive devices and treatments that might help.

I work every hour, every minute, to beyond exhaustion. There is no coffee break, no downtime, no weekends, no vacation. No time off despite excellent behavior. And yet – my job doesn’t look like a job to most people. Everyone who sees me thinks I’m a-ok as I pretend to be Normal. I even spend energy faking it for my family. They have no idea how hard I work to appear better than awful. And I want so much to be Normal. I dream of waking up one day – and all of this struggling will just *poof* be over.

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Making Invisible Illness… visible

Some have noticed my piercings💎 It’s been Donna’s own therapeutic attempt to make my invisible illness visible… #ChronicMigraine …I placed a piercing for every year I’ve been Chronic … there’s 11 in there and since I’m running out of room with no cure in sight, I may just stop there. Lol😁 It’s been an interesting conversation starter. Some people ask: “Wow, didn’t all those piercings hurt?” And I just giggle… and think about my ~18 multiday migraines a month x11 years (not to mention my 4 drug-free child births – which, surprisingly people relate to easier 🤷‍♀️)
I do love my bling… and it’s always been my belief that if you’re going to migraine chronically, it might as well be beautiful. 💜❤💜

djk #MyBeautifulMigraine
#MigraineAwareness #MAM2019 #MHAM #sowingtheseeds #speakyourmigraine #migraineart #invisibleillness

#ShadesForMigraine

June 21… Migraine Solidarity Day… spread awareness 😎

#MigraineAwareness #ShadesForMigraine #ChronicMigraine #MAM2019 #MHAM

My kiddos😎 Corey actually had a terrible migraine today. 😢💔

My friend posted in support!!❤ I was so overwhelmed ❤

My husband sent this!❤

Family history

It doesn’t happen too frequently, but Corey woke with a migraine today. He’s got a maxalt on board but may have to call in sick to work if he can’t get relief. 😦 While all my spawn have had a migraine in their lives, Corey is truly my episodic migraineur. Watching your child struggle with migraine is incredibly overwhelming and horrible. I’ve worked a LOT with him about how to manage his disease: track episodes with a phone app, make healthy choices, take magnesium (and other supplements) for prevention, identify his triggers, and treat episodes very early and aggressively. And he does an amazing job. It sux he is genetically predisposed to migraine because of me, but I am aware he also inherited awesome traits. 🙂
I dream of a world where there are no more migraines EVER.

#MigraineAwareness #MAM2019 #MHAM